An update on Nicole

[Nicole's Mom]

Thanks Jessica. It was so similar for Niocle how you relate what it was like for you. Nicole's boyfriend works all day - long hours and even though we'd go over- her father and I over now and then a friend would as well but she was alone way too much. Like you said- that was really hard. And it's not good to be alone like that when you are sick. We did have a nice Thanksgiving and I hope you had a nice one as well.

Regards,

Beverly

[Dawg Tired]

Beverly, I feel for you and Nicole. I have spent months at a time in bed with serious brain fog, unable to read or watch TV even. The day I managed to walk as far as the living room - about 15 feet - I thought I had really done something big! Nicole is SO blessed to have you for a mom. And it sounds like your hubby is a sweetie also! I hope y'all had a happy Thanksgiving and that Nicole didn't get too worn out. It seems that my best times are also during the middle-of-the-night hours. Wishing you both the best!

[Guest tearose]

Hi Beverly, I'm just getting caught up and wanted to say hello to you and Nicole. I hope the transition continues to go well for you all. It can only help to have Nicole closer since you were running back and forth with meals and doctor visits...I hope that it won't be too long before Nicole is able to regain some strength and you will see her rally. I can't overstate how my heart goes out for you as a mother. I imagine you torn between dealing with your own life issues and wanting the best in life for your daughter and seeing her struggle and well, I am worn out for you! I just continue to send you warm healing light and prayers.

Forgive me if I missed something here. Does Nicole have a complete diagnosis yet? If you don't and if that means going to a major center to get the best dx and treatment plan than go for it! I think that once you have a handle on what the complete diagnosis is, you will be able to treat and see improvements. For example, if I had not done the thermo-regulatory sweat test, I would never have had the documented evidence that there is denervation in my lower extremities. If blood is pooling, the best way to treat this is compression, not medication.

I'm still a bit fuzzy since expending energy for Thanksgiving, but I am trying to encourage you to push just once more for a most complete battery of testing to help Nicole. If she is an inpatient somewhere, they will be able to monitor her 24/7. And with you by her side, you can remind her that soon there will be good answers. warm loving thoughts to you, tearose

[goldicedance]

Beverly,

I am still so worried about Nicole. I personally think you should do whatever is possible to get to the Mayo Clinic in Rochester. The suggestion that you go right to the emergency where is a good idea.

Otherwise, Nicole's doctor might call the Mayo directly and talk to Dr. Low or Dr. Sandroni. Either might give advise to the doctor about treatmetn and offer assistance with admission, etc.

Has she already been to the local hospital--admission, testing, fluids, med changes?

Have you asked her physician about trying Mestinon?

You never said where you live.

Another possibility is this is closer is to contact Dr. Hoeldtke at West Virginia University Hospital to see whether he would be willing to see Nicole. He does a lot of work using Octreotide.

Also, might it boost Nicole's spirits if during her window of "energy" she started posting on POTSPLACE.

What medications has she tried for POTS?

Hugs for being such a special mother!

You and Nicole remain in my thoughts!

Lois

[Nicole's Mom]

Thank you Dawg Tired for your response. That must have been awful when you were in that position. At the time were you really fragile? It sounds like it if walking 15 feet felt like an accomplishment. I'm wondering how you are doing these days Dawg Tired. Are you able to get out and about? If so what do you attribute to moving forward? What meds do you take? And have you gone through all the testing that has been recommended for Nicole to go through? I don't mean to ask so many questions but what are your days like? I have read over some of your past posts but I can't really tell.

Tearose- Thank you again for your warm and thoughful suggestions. The sweat test sounds kind of grueling. Is it? Thank you for mentioning it. It could possibly be one of the additional tests her POTS doc wants to do. It seems like something many of you have gone through. He wants to do more testing when she is stronger. We are in the process of finding out exactly what he wants to do in his autonomic lab re: testing. She has undergone some testing there but he wants to do more. I think it would be a good idea to compare what he would like to do and is equipped to do compared to Mayo. I'd be curious to know how this sweat test can tell that you have denervation in your legs. What is denervation anyway? And is this what make blood pool? It certainly would be good to have such a thing documented. Tearose, I know that you have difficulties with meds so I'm really glad that the compression hose helps you with the pooling. I wish there was more that you were able to do to make your own life easier. When you ask does Nicole have a complete diagnosis I think you are asking if she has answers like is there denervation or not, right? And other things I imagine.

It must seem to all of you as though we are not being complete with Nicole in hurridly looking for answers. But at this time her fragility is a huge issue. She does not bounce back like all of the rest of you do unless she is totally in a sturdy remission. When not sturdy, she spirals downward and downward and stays there from the least bit of aggravation. So if she were to travel or undergo tests it would have to be when she was really sturdy in a remission -when there is the least chance of severe repercussions. I know this hardly makes sense to many of you who have been through the rigors of the travel and the tests but this is the way it has to be with someone like Nicole.

Perhaps the mistake was not doing more testing while she was in the last remission. None of us ever imagined that her situation would have downslid to this point. And actually - ironically- it was going to those 2 new doctors on Sept. 15th to look for answers- and hopefully treatments -the travel and the strain that made her drop six levels below the basement. She wasn't sturdy enough then to make that trip and now she is way less sturdy which is quite an understatement.

Our job now is to keep Nicole from sliding backwards and to try to presently find any "answers" we can in the most benign way that we can find now and to keep nurturing her like we are doing and keeping her ANS calmer so that she can move along albeit slowly and surely like she has been doing. I know most of you disagree with our philosophy but we are learning that in Nicole's case we cannot rush things. To rush and to hurry her off here and there would be to act in her detriment.

Naturally if she wasn't showing any signs of improvement and we didn't have faith that she would pull out of this of course we would have to reassess our philosophy. But she is coming along and now we have to continue having faith that this will continue. Sometimes it's hard to keep the faith and be patient. Anyway- that's all I have to say for now. Except to thank you so much everyone for your concern and thoughts. Everything that you all suggest are great suggestions and over time- we will likely travel all those roads.

Beverly

[geneva]

Beverly, I read your last post with concern. I certainly don't think there is criticism or disagreement with your approach with Nicole...on the contrary, there is much admiration and respect for your devotion, the hours you spend researching, and the amazing way you have found a doctor who makes house calls (who knew they still did that!). As the mom of a 25 year old, I can't imagine how incredibly hard caring for a very ill child, even one who is an adult, must be especially when you too have your own health challenges. I think you are doing an admirable job and hope you appreciate that as much as I am sure Nicole does.

Those of us here can only offer suggestions of what might be helpful or what has helped us. But the bottom line is that Nicole knows what she can and can't do at this point. I know when I was at Mayo I declined some of the tests because my health was so fragile (extremely uncontrolled BP for example) and I felt the reaction and the stress of the test was too much for me. The dr. of course tried to make me feel bad but in the end I knew I was right to postpone. Since Nicole (and you) have lived with this condition for 8 years I think she knows what she is capable of handling. One step at a step....and she has made a big step moving and settling into your home and I hope that there are more small steps forward.

I hope very much that you are remembering to do the things that are important to you to maintain your health Beverly. I can see how easy it would be to lose yourself also in this illness but please don't let that happen.

[Nicole's Mom]

Thank you Geneva. You cannot imagine how helpful your kind and comforting your words are.

Beverly

[Guest tearose]

Beverly, as geneva said and as I believe most here believe, we are respectful of all you have done and are doing. We are only trying to suggest things you may not have thought of. We will never judge you! We are being honest with you.

What is a new and different challenge is to be so apart from Nicole when we are really most like her! We communicate a lot with you and appreciate the difficult care-taking role you have. What I think you may be feeling is our frustration at trying to help someone we only know through you. I am NOT saying that it is bad, it is just different. I hope you realize how special you are for always asking difficult questions and working on ways to improve your life and that of Nicole. Please remember that typed words here are also sometimes not what our hearts are trying to express. Warmest regards, tearose

[yogini]

Beverly,

I second what Tearose and Geneva have said. You are doing a great job, and we are just being overzealous in trying to help Nicole (kind of like what you said about her new doctor in yesterday's post). As someone who came onto the board only shortly before you, I know it can be really hard, because different people have different opinions about medicines, doctors, etc., so you wind up getting lots of different advice (sometimes opposite advice). Getting tons of advice is what I love about this site, but sometimes it can be really difficult to determine which advice will work for you. Remember that none of us (as far as I know) are doctors, and we are only giving you our best guess as to what might work for Nicole, withought knowing everything about her situation. You know her situation better than anyone else, and you are in the best position to make decisions. It's clear to us all that you obviously care for your daughter and won't guide her in the wrong direction.

As for your question below on denervation, it's when your nerves in your arms and legs don't work properly. When you stand these nerves are supposed to cause the blood vessels to constrict and cause a slight BP increase, but for many POTS patients, they don't work. So when we stand, gravity pulls the blood downward and causes pooling in the legs, causing the POTS symptoms. These same nerves also cause us to sweat, which is the reason for the sweat test. In the one I had at Mayo, they ran a small electrical current though my nerves to see if I would sweat. You may actually be able to see if Nicole has pooling without any test. My hands and legs turn bright red. When I first got POTS, it used to be so bad that they were dark purple and painful.

[Nicole's Mom]

Thanks tearose and rita for your kind comments. I always appreciate comments from everyone and am so grateful to have you all. I think that over time Nicole will heed many of your words of wisdom and hopefully as she grows stronger we can get to the bottom of some of her malfunctioning mechanics by learning from you all which are the best tests to use that benefit the patient the most. Also thank you Rita for answering the denervation question. I've seen that term "denervation" used so much and I never knew what is was. I hope this is one of the tests her POTS doc does. By the way I should probably put this in the other post and maybe I will but she is definately NOT going to do the mercury challenge test.

Best Wishes,

Beverly

[Dawg Tired]

Beverly, sorry I didn't get back to you sooner, I was gone overnight. Yes, I was extremely fragile while I was confined to bed. I think the only thing that helped was time. I tried Florinef but it made my BP skyrocket.

I was working full-time+ at an insurance company as a utilization review nurse when I started getting sick and I would walk 2 miles every morning. I started out with shortness of breath and fatigue, couldn't figure out what was going on and my primary care doctor wouldn't give me a referral to a specialist - of any kind! My boss called him and asked him why, if he couldn't figure it out, wouldn't he send me to Mayo or Vandy. He told her that "she'll get better sometime". My boss then came and told me that as far as they were concerned I didn't need a referral. One of my co-workers, whose husband was a doctor recommended a very dear doctor who was a board-certified pulmonologist, internist and infectious disease doctor. My friend told me that "if he can't figure it out he can at least point you in the right direction". He did mainly pulmonary tests then sent me for a stress test. They were all negative and when I went back he did a "poor man's tilt-table" and found I had orthostatic hypotension. He sent me for a TTT, which was positive, and then to an EP. I had a really crappy (hope I don't offend anyone!) EP who tried the florineff, I gained 16 pounds in 4 days - Dr told me to stay on it "for a month or so" and see how it was then. YEAH RIGHT! When I was in nursing school I had learned that this amount of fluid retention would quickly put me into CHF. My BP was running 220/120 in addition to the fluid retention so I took myself off of it. Then the EP decided I needed a pacemaker. I had never seen the EP, they kept sending me to a RNP in the office. I requested many times to see the EP but kept being refused. I ended up getting the pacemaker. It did not help, I still have pain - 2 years later - on the operating site.

We had terrible financial struggles, I had been our only source of income since my husband had been in a plane crash 14 years ago and has chronic severe headaches.

At this point, after 2 years I finally got my SSDI approved so now we have an income. it took so long that my back pay will pay off our house. YAY!!

My days - I manage to get to church most - but not all Sundays. I don't drive. I can't stand long enough to wash dishes or cook. I have a barstool I sit on to work on washing dishes a few at a time. I rarely cook, we mostly eat microwave dinners. Some days now I can walk to our chicken pen and watch them - I find them soothing. I have lost quite a few of my fine motor skills, I can't embroider or crochet anymore and sewing everything takes about 4 times as long as it used to. I still faint and have a lot of pre-sync spells. Our church men got together and finished a room at the back of our house where I have a TV and a huge picture window where I can watch birds. That is where I spend the most time. On days when I can't read I listen to books on tape. Please excuse the long post, I hope I answered your questions. Don't hesitate to contact me if you want to or need to.

You are to be greatly admired for your devotion and willingness to help Nicole.

[Nicole's Mom]

Dawg Tired, Thank you so much for sharing your story. My heart goes really out to you. Because of what I see with Nicole I can easily understand your struggles. It sounds like you really got a real run around and then to have that pacemaker put in and not have the results you hoped plus on top of that to have pain there seems so unjust.

You have had your share of hardships which I can relate to as well. It also sounds as if you have a wonderful church community - and that your church brings you much comfort. Plus that the church men finished off that room where you can relax and watch birds speaks volumes of how caring your church friends are as people- and how much they care about you. No wonder you try to go to church a much as possible. It must feel like you are wrapped in many arms when you are there.

It sounds as if you love birds. My husband's avocation is ornithology. He loves birds too and in fact teaches a bird-watching course every Spring. If you ever see an unusual bird that you cannot identify send me a description of it and my husband will be able to tell you what it is.

I am so happy for you that you finally that disability and that the back pay will pay off your mortgage. You obviously had to wait a very long time - 2 years is a long time- but at least something good is coming from it. To be without a mortgage is to have less financial stress. And I hope this takes a burden off of you- to have some income plus less expenses.

I am so glad to have this communication with you and that you have told me so much about yourself. I will keep you in my prayers and I will keep a close watch out for your posts. Thanks so much.

Regards,

Beverly

[Dawg Tired]

Thank you, Beverly. I will certainly keep you and your family in my prayers. I am extremely fortunate to have such a caring church family. (OOOHHH do I love all of them!)